National Cancer Institute

at the National Institutes of Health

Adjustment to Cancer: Anxiety and Distress (PDQ®)

Health Professional Version

Screening and Assessment

Screening and assessment have been viewed as two distinct processes.[1,2]
Screening is a rapid method of identifying patients with psychosocial distress and is
typically conducted by non–mental-health professionals using brief self-report questionnaires to determine whether an individual needs referral
for more extensive assessment.[3] The psychosocial assessment of the cancer
patient is a more in-depth clinical interview focused on factors relevant to
coping and adaptation. Mental health professionals conduct the assessment
interview to determine how well a patient is adjusting.[1]

Various comprehensive cancer centers have developed models for screening for
psychosocial distress. Although there are notable differences, most models
involve the following sequential steps:

Screening administration.

Scoring and evaluation.

Referral.

Most screening for psychosocial distress focuses on the individual patient; however, some family-focused screening procedures are being developed.[4]

Administration of a screening instrument involves a 5- to 10-minute
process in which each patient answers a series of simple, straightforward
questions about distress, either orally or via a self-report paper-based questionnaire or
computer questionnaire. Answers are scored and evaluated on the basis of previously
determined criteria. If scores fall above the defined criteria, then a formal
referral to the appropriate discipline (social work, psychology, psychiatry,
palliative care, or pastoral care) is made. Distress management then begins with
a more comprehensive face-to-face psychosocial assessment interview [1] by a
qualified health care professional (e.g., social worker, psychologist,
psychiatrist, palliative care specialist, or pastoral counselor) appropriate to the issues identified.

The success of screening programs can be measured in terms of the following outcomes:

Accurate identification of patients who are experiencing significant psychosocial distress.

Decreased level of distress and improved quality of life resulting from the screening program.

Few empirical studies have evaluated the impact of structured screening programs using the outcomes above. Intervention in most of these studies included telephone follow-up of screening results with referrals or in-person discussions with clinicians, trained or untrained in screening. Study designs have differed in terms of screening tools (brief vs. comprehensive screening tools), intervention components (trained vs. untrained screening clinicians), and study outcomes. Study designs have also differed in their controls; for example, control groups in some studies did not undergo screening,[5] while others involved patient screening but with no screening results conveyed to clinicians.[6]

The results of the screening studies have been mixed, depending on the structure of the screening programs and the assessed outcomes. Two studies found no meaningful differences between control and intervention groups in distress, quality of life, or cancer needs.[5,6] Low patient acceptance of psychosocial referral services was one of the limitations identified in these studies.[6]

In one study, a subgroup of moderately to severely depressed patients showed a significant reduction in depression after the intervention,[6] while another study concluded that the best predictor of decreased anxiety/depression was referral to psychosocial services.[7] Another study showed feasibility of implementation of a personalized as well as a computerized screening program in a large patient population (N = 3,133) at a tertiary cancer center.[8]

Further empirical evaluation of the effectiveness of screening programs is necessary, given the mixed results to date. The following examples will help to illustrate the process.

Model Screening Programs

Memorial Sloan-Kettering Cancer Center has experimented with a distress thermometer (DT) modeled after those used to
measure pain.[9] The descriptive anchor points on the thermometer include the following:

"No distress" at a rating of 0.

“Moderate distress” at a rating of 5.

“Extreme
distress” at a rating of 10.

Patients are asked, “How would you rate your
distress today, on a scale of 0 to 10?” Accompanying the thermometer is a
problem list that helps identify relevant potential sources of stress. The patient is asked to check off the problems that are most relevant. Categories of problems include the following:

Practical (e.g., housing, insurance,
or transportation).

Physical (e.g., pain, nausea, or fatigue).

Family or support
(e.g., partner, children, or friends).

Emotional (e.g., worry, sadness,
depression, or anger).

Spiritual/religious (e.g., relating to God or loss of
faith).

The primary oncology team (oncologist, nurse, palliative care
specialist, and social worker) is responsible for administering and evaluating a
patient’s response to this brief screening and arranging for a referral, when
necessary. Preliminary testing of this procedure used a cutoff score of 5 or
higher as requiring further evaluation. Initial needs assessments have shown
that 20% to 35% of patients report significant levels of distress.

At Johns Hopkins Cancer Center, all new patients receive an 18-item version of the Brief
Symptom Inventory (BSI),[10] which lists 18 problems people sometimes experience
(e.g., feeling faint or dizzy, having no interest in things, loneliness, or nausea or
upset stomach). They are asked, “How much were you distressed by” each of the
18 problems “during the past 7 days including today?” The procedure is
automated and utilizes existing clerical and support staff to distribute and
retrieve the inventory during the first or second visit.[2] After computerized
scoring is completed, professional staff is involved when offers for services
are being provided. Patients screened as having high distress are referred to a
social worker for immediate follow-up; those screened as having low
distress are referred to the psychosocial orientation program, which is a structured educational program designed to enhance the adaptation of patients
by providing information about a range of psychosocial programs (e.g.,
disease-specific support groups or psychoeducational presentations).

The Oncology Symptom Control Research group at Community Cancer Care typically
screens all incoming patients with the Zung Self-Rating Depression Scale
(ZSDS).[11,12] The ZSDS is a 20-item self-report depression screen that has been
used to detect depression and more general distress; single items are also used
to screen for conditions such as fatigue.[13] Staff typically administer the
screen while patients are in the waiting room. Scores are analyzed immediately
after completion so that the medical oncologists can be briefed on any
pertinent issues. In addition, patients scoring in the moderate range or
higher are identified for further follow-up and more extensive interviews and
assessment by the staff psychiatrist or psychologist. Also, patients
who trigger single items of interest such as fatigue are interviewed and
monitored for possible inclusion in a number of symptom-control research trials.

Distress Thermometer

Although many screening instruments have been tested with cancer patients (see Table 1), the National Comprehensive Cancer Network (NCCN) DT has been the most widely investigated. The psychometric properties of the DT (a 0–10 visual analog scale, in the form of a thermometer labeled with “No Distress” at 0, “Moderate Distress” at the midpoint, and “Extreme Distress” at 10) have been investigated.[14]

The measure was found to have reasonable convergent and divergent validity when compared with two well-established, multidimensional symptom inventories. This very brief rapid-screening procedure has a moderate ability to accurately detect distress as defined by scores indicative of “caseness” on the two-symptom inventories. When specific cutoff scores were tested to maximize sensitivity and specificity, no single cutoff that maximized accuracy of classification was discovered. Thus, it was recommended that varying cutoff scores result in different referral recommendations, such that low scores result in no referral, moderate scores result in an optional referral, and high scores result in a strong recommendation for further interventions.[14]

Self-Report Screening Instruments

The NCCN single-item, rapid-screening instrument asks patients to rate their distress on a scale of 0 (“no distress”) to 10 (“extreme distress”). On an accompanying problem list, patients are asked to indicate what has been a problem for them in the past week. Studies [14-18] have tested the ability of the single-item measure to accurately identify patients in distress. In general, these ultrashort screening methods have demonstrated only modest overall accuracy. They are best for ruling out, but performed poorly at confirming, distress, anxiety, and depression.

Many other self-report questionnaires have been used as screening instruments (see Table 1); in general, they also are better for ruling out distress and perform poorly at confirming distress. Thus, most screening instruments will yield a high number of false-positive results and need to be followed by a more extensive psychosocial assessment interview.

Table 1. Examples of self-report Screening Instruments Used for Identification of
Psychosocial Distress in Cancer Patients

Self-report screening instruments must be scored, evaluated, and discussed with
each patient. Triage—the process of communicating screening results,
discussing each patient’s needs, and determining the best course of further
action—is key to the successful use of screening. In fact, screening without
availability of appropriate treatment resources is considered unethical. The primary oncology team (oncologist, nurse, palliative care specialist,
social worker, and counselor) is responsible for successful triage. In some
studies a significant percentage of patients who report moderate to high levels
of distress refuse further assessment.[26-29] Thus, it is important to
consider how the primary oncology team can introduce the need for further
psychosocial assessment.

The
NCCN standards of care [9] suggest distress rated as mild might result in a
referral to a local self-help group or management by the primary oncology team
only. Distress rated as moderate to severe warrants referral to other
appropriate professionals (psychologists, psychiatrists, social workers,
palliative care specialists, or pastoral counselors), depending on the nature of
the distress.

Psychosocial Assessment

The assessment of psychosocial adaptation should follow screening when distress is identified. The psychosocial assessment is typically a semistructured interview during which the professional evaluates how well an individual patient, a patient’s family, and other significant people in a patient’s life are adapting to the current demands of the illness. In general, this assessment process considers a wide variety of factors relevant to overall adaptation.[1] (Refer to the General Factors Influencing Adjustment section of this summary for more information.)

A successful transition from screening to assessment involves clear communication between the oncology team and the patient.
Although there is no single best way to talk to patients about psychosocial
needs, clinical experience suggests some important concepts. First, most
patients will respond to the recommendations of health care professionals who
exhibit trust, expertise, warmth, care, and concern.

Choice of words is important. Words that suggest the stigma of serious mental
illness, such as psychiatric, psychological, mental disorder, maladjustment, or mental illness, should be avoided—in favor of words such as distress, concerns, worries, uncertainties, or stressors from the illness or its
treatment. Suggestions for word choice include the following:

The questionnaire you filled out helps us to understand you as a whole
person, and we want to provide the best care possible for you—physically,
emotionally, socially, and spiritually.

As you may realize, a serious illness can affect the quality of your life
in many ways (emotionally, socially, work, relationships, finances,
energy). There is much more to this illness than just the physical, and
we want to be sure we are addressing these other dimensions of your life.

Your concerns and worries are very understandable, given your illness and
its treatment. We don’t want to ignore the (emotional, social, spiritual)
aspects of your experience right now.

We have found that many patients benefit greatly from a chance to talk
further about their concerns with a (social worker, mental health
professional, palliative care specialist, or pastoral counselor), and we
would like to schedule that for you.

For further explanation, we suggest an interview that lasts about 45 minutes with a professional who will:

Listen closely to you.

Want to know about your experiences with your illness.

Ask about you, your family and friends, and other support persons.

Ask about how you have been adjusting to your illness and may
encourage you to continue (and give you feedback about) successful
coping strategies you are already using.